MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Anonymous's picture
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I just finished my first surgery(clnd) and will be transferring doctors. Is there a certain time limit where you have to start a drug or the insurance will deny you? (Interferon or yervoy seems like my only options for stage 3) Is there a timetable on how fast you have to start systemic treatment after a clnd of armpit?

Thank you

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arthurjedi007's picture
Replies 3
Last reply 11/27/2015 - 8:37pm
Replies by: CHD, Bubbles, gregor913

I'm currently taking OxyContin in its 10mg 12 hour release pill. Plus oxycodone in its 5mg breakthrough pain pill. The doc says the only thing they can do is up the dosage. I was on some generic morphine 12 hour release pill before the OxyContin. Also sometimes the heating pad still helps.

Last winter I was on oxycodone. And some type of morphine breakthrough pain pill. Plus a couple strengths of fentanyl patch. Plus some awful nerve pain pill. But the radiation that almost did me in got me better so i wasn't on anything until a couple months ago.

The pain I deal with is a lot of spots. Although lots of pain it isn't the sharp pain like last winter.

The worst I would say is my left hip. There is even a small bulge on the side of the hip. Well I say small. About the size of my palm and about 1/8 to 1/4 inch height. When I press on it feels like bone. I dont have scans yet to prove it thats in a couple weeks as the regular scan but I suspect the tumors there have deteriorated the bones. The pain though is more the rest of the hip.

Also pain in the left upper leg and knee and left lower leg and the middle bottom of my left foot. The right leg has similar issue but not to that extent.

The second worse pain is my lower back and tail bone.

Then as we go up my spine I would think since over half the t10 is gone that would be pain but it isn't. Only if I'm out and about in a wheel chair or sit and sleep somewhere besides home.

There's also a huge pain in my lower left back ribs where they told me is a tumor going into my chest cavity. But it doesn't hurt all the time. Mom says she feels a bulge there now that used to not be there a month ago.

Then of course is the huge hunchback of Norte dame tumor of my left shoulder. But it only hurts around the edges and deep in the center.

Then once in awhile there is pain with the tumor on my head that goes through the skull pressing on my brain.

Other than those spots I don't really have pains much elsewhere except sometimes here and there.

I was wondering if there is something better for pain? So far though the only side affects to the pain pills is some tiredness. Also some constipation so I have to take mirilax daily.

As you can imagine it is almost impossible to walk. When the pain pills are working I can manage about 5 minutes. That's up from 2 minutes a couple weeks or so ago. But I've gotten unsteady so instead of walking around the house I go around the dining room table in one direction then switch to the other. Keeping one hand on my cane and the other on the table. Just started that yesterday but seems to work pretty good.

So I dunno if there is something better for pain. I know across the river they approved medical marijuana but there's no way I could smoke something. Plus I have no idea of the side affects. I've heard something about cannibus oil but I dunno if that helps with pain and what it's side affects are or where to get it. Sooo is there anything better than what I'm doing?

As far as treatment they got me on keytruda and abraxane. I lost my hair, some tiredness and mild stomach issues but otherwise ok with it. I get dose 3 Monday and the week of 7th go back to Houston for scans and see the doc. At least I'm going to try to make it. The trip is going to be very rough on me. Also I have no idea what will happen there. I know after first dose my ldh dropped 25% so I'm hoping that continues.


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gregor913's picture
Replies 4
Last reply 11/28/2015 - 10:53am

Hi I'm currently 3b stage. I was just wondering how clinical trials work. I have hmo insurance.

1. Do you have to go to the hospital where the trial is at etc travel.

2. Who pays for the trial. Is there any cost for us.

3. Does my insurance have anything to do with the trial.

4. Does anyone know of any adjuvant trial options I can enter. I'm in the Chicago area.

5. Excluding clinical trial. If I take a drug like ipi since it's approved now. Will the drug be covered in the future if I need to take it again.

Thanks Greg

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Anonymous's picture
Replies 11
Last reply 11/28/2015 - 11:06am
Replies by: geriakt, Maxapooh, Bubbles, kylez, Anonymous, arthurjedi007, Millykamp

Hi Everyone,

In October 2013 I was diagnosed with melanoma stage 4 with many metastases in my liver and both ovaries. I started to participate in clinical trials ( Nivo/Yervoy). Everything went really well, without any side effects and my CT scans were showing that liver metastases are not spreading and one on the ovary is getting smaller. Although there was a small tumor in my spine, the doctors told me there was nothing to worry - the treatment is doing its job. 

In April 2015 i was rushed to ER with severe pain in my right side of the hip and the whole leg. CT didnt show anything. I was on strong painkillers for two months and begged to do MRI. MRI showed I had new tumor on my hip bone. I was withdrawn from the trial and told I was getting Ipi. In July I had a radiation on my hip and spine tumors. At the same time headaches started and there was constant noise in my left ear. MRI of the brain showed one tiny metastasis which was  treated by cyber knife and I also got treatment for vertigo. Then my doc decided to put me on Keytruda.

At the end of July my headahces got worse, I started to have double vision, nausea, lost control of my left arm and almost couldnt walk. The urgent MRI of the brain was performed and my oncologist told me I had leptomeningeal metastases . I stopped Keytruda and switched to Tafinlar/ Mekinist combination which stabilized my situation.

My oncologist refused to do lumbur puncture saying there is no point in it.  I was told this is terminal complication and there is no cure. When Tafinalr/ Mekinist combination stops working, there is nothing they can do. 

I live in Israel and the medicine here is considered to be one of the best in the world. But I feel that my doctors gave up on me. I read that many patients with leptomeningeal complication in US are getting brain radiation and spinal chemo and other treatments. I am 31 year old woman, my body is still fighting. I dont understand why my oncologist doesnt want to do anything. I feel very desperate and depressed since the diagnosis.  Because of the high fevers and other side effects I had to quit my job and now the only thing I am doing is looking for any treatment in the internet. But there is almost no information on leptomeningeal metastases in melanoma.

Please let me know are there any options? Can I ask my doc to go back to Keytruda? Is there anyone with the same diagnosis? please help me, I am very desperate



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Scooby123's picture
Replies 2
Last reply 11/28/2015 - 2:36am

Hi all,

I contact my nurse due to been in pain a lot round my ribs and side area. Not like the pain I get from my arthuritus which I have in my back and neck. I had scans done two weeks ago results next week. But she spoke to my consultant and called me today with scans stable still so not sure why in pain they are checking me next week. So was so pleased all stable with scans so next week when go least I will not have that sickening anxious feeling waiting for results of scans.

thanks for all your support 


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Anonymous's picture
Replies 2
Last reply 11/26/2015 - 11:28pm
Replies by: Anonymous, Janner

Can somebody please explain to me ulceration. I mean if it has spread to your lymph nodes why is it worse or even significant. Are the cells more aggressive? Are the tumors always worse? I know it carries a worse prognosis but why? Been looking on the internet and cant find out the reason. The only thing I found was a study that said ulcerated melanomas tend to have a higher mitotic rate.  Anyone know?

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Scooby123's picture
Replies 3
Last reply 11/28/2015 - 11:10am
Replies by: geriakt, Scooby123, Gene_S

Hi everyone, i completed ippi end of july had a scan straight away to see if it was working. it had reduced my cancer by 50%. i have had another set of scans but still awaiting results after 2 weeks. i go next week to get them. i have been in a lot of pain on my left side round my ribs and lower back left side. some days it is worse than others.  am wanting to know if it still could be ippi working or tumours growing. my tumour in one of my lungs went down to 0.8mm could it grow and cause pain in a short period of time or could it be treatment still working. i know people who have been on ippi not showed responding till later on finishing it. i know i got results from it straight away but can it stop working so quick. Any experience with this treatment and after completing it would be much appriciated. I have lung liver who knows eleswhere involment.



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Patina's picture
Replies 1
Last reply 11/26/2015 - 8:39am
Replies by: Scooby123

Hi Everyone,

As many of you know, my Mom was diagnosed with Stage IV melanoma in  November of 2013.  And 2 years ago today we found out that the radiologist completely missed 3 brain mets.  Even with this and everything that's happen she has had a terrific outlook due to how quickly she responded to the treatments AND all the terrific doctors at USC in Los Angeles.  

We were there again yesterday and after her 4th infusion of Keytruda and the new CT scans and MRI of her brain we are thrilled that things are stable or still shrinking AND there is nothing new.  



She was misdiagnosed for almost a month after getting the news that she was Stage IV. After seeing 3 melanoma specialists she was also diagnosed with brain mets too. She had gamma knife radiation for 8 or 9 tumors (1 was missed) December 9, 2013 and started Yervoy 4 days later.  

Her body "loved" Yervoy as far as the cancer went, but she got colitis pretty bad and only had 3 infusions. She did end up having 17 more brain mets found in April of 2014 and we switched the treating neuro-oncologist and radiation oncologist who had been treating her. (They were sub-par as far as I am concerned and we were lucky my Mom did not have any permanent or detrimental problems due to thier treatment or advice.)  

My Mom had just over a year of very good scans and ended up with a reoccurrence and needed a craniotomy in June of this year and another round of gamma knife radiation for 1 new brain met in August.  

She started Keytruda in late August of this year and the tumors in her trunk are still getting smaller or are stable. All about the size now of a grain of rice.  We are hoping that the Keytruda can boost her immune system enough so that she does not have any further issues with brain mets.


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Millykamp's picture
Replies 2
Last reply 11/26/2015 - 9:55am
Replies by: jamieth29, tschmith

I just wanted to wish those who celebrate Thanksgiving an very Happy Thanksgiving!!!!


For ose in other country I hope this find your day well and full of happiness and joy!!!!!


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Replies by: gregor913, Ed Williams, Bearsworth, Anonymous, kylez, AshleyS

I got my first infusion 2 Friday's ago and started having a small fever (99) this past weekend. I now have a rash over my entire body that itches like crazy. I am able to curb the itching with Sarna and Benadryl spray. I was also having some mild diarrhea that I am able to control fairly well with Imodium.  Seems as though within 5-10 minutes after whatever I eat I get a cramping stomach. I'm curious if people that have had side effects if they were similar and how long did it last?

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Bubbles's picture
Replies 1
Last reply 11/26/2015 - 10:00am
Replies by: jamieth29

One more way Opdivo has been approved for use in melanoma as first line for V600 wild type, nonresectable or metastatic melanoma....announced today:

Great love and appreciation to the ratties!!!  All my best to all of you.  Celeste

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BethA in VA's picture
Replies 1
Last reply 11/24/2015 - 9:57pm
Replies by: Anonymous

Help.  My first post was blocked as spam.  I'm not spamming anyone.  This is real.  Diagnosed in 1992.  Then again in 2004.  Use to be here alot.  Now 11 years later, have lesion on stomach about size of quarter.  It was water filled, now has scab and fibers in the center that are yellow and look like material.  I pulled them out with tweezers.  There was no end to it. 

Does anyone else have experience with a fiber area in a tumor? 

Melanoma tends to cut into your looks!!


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Anonymous's picture
Replies 0

We haven't heard from Ginger888 for a long time. I hope she is doing well.

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Anonymous's picture
Replies 2
Last reply 11/24/2015 - 8:38pm

I have failed Keytruda and the docs are now offering me Ipi/Nivo combo.

I am a little bit scared to do this combo as i had pretty bad GI issues with Keytruda.

Has anyone had success with the combo after failing Keytruda?

I am not sure if i have any other options anyway!




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jsagraves's picture
Replies 8
Last reply 11/26/2015 - 12:38pm

I'm not really sure if I'm stage 3a, 3b or 3c.  Based on the results I received today, I would assume 3a.

So I went through full node removal in my neck and underarm on my right side.  The surgery took place Friday, November 13 and I received biopsy results today.  They removed a total of 59 nodes from those areas and every one came back negative for cancer, which I'm very thankful for.

I'm very numb from the top of my ear down to the top part of my rib cage and trying to gain strength and range of motion back in my arm and turning my head.  Other than the numbness and drainage (I have a drain tube), no significant side effects from the surgery.  I'm assuming the numbness will dissipate over the months ahead.

We are still trying to determine whether or not to pursue further treatment, although I think I've ruled out interferon.  I may try to find a clinical or observe from here on out.  We'll see.  Anyway very thankful for the good news today and while it could be said that the node removal was unnecessary (in hindsight), you just make the best decision possible with the information you have and don't look back.

Any thoughts on clinicals versus observation is appreciated.  I'd like to focus on treatments that build my body and immune system, not break it down further.

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